only five months more of hell….

Now that Bear’s landed this new sweet gig, we’re finding out all the fine details and making all the appropriate plans. What will his hours be? How long will the commute be? Do we need a second car now? How fast can I spend all this new money?

And of course, the thing I’ve been waiting for for three years now….Health Benefits.

Unlike the company Bear currently works for, which gives their executives insurance starting day 1, this company makes you wait 90 days. Which is pretty standard, I realize, but with the start date still two months away, that means that I have 120 days left to be disabled.

The relief of the new job didn’t last very long, now to be replaced with the ungrateful depressed funk.

We were hanging out with our Canadian friends today for the holiday, and girl Canadian, who I love because she’s so cute and sensitive and can’t say the “Bitch” word, but will talk about her hymen without batting an eyelash, was asking about our IVF plans.

When a job was still some speculative obtuse thing, we planned on doing IVF in a year. Thanks to Bears grandma, we’ve got the money saved up. So now we just need health insurance to get my endo treated, and to properly take care of the child should I get knocked up according to plan.

But as I was reviewing the timeline now that I have an actual start date, I realized something pretty petty and stupid in the grand scheme of things that actually really bothers me.

Mormons as a community are really tight. And we say that anywhere in the world you go you’ll have a family if you have a ward (which is like a congregation). We even refer to our congregation as “our ward family” to emphasize the unity we have together. My current ward really does feel like a family. They all know me and love me and know my history and are pulling for me. Just Friday night I met a woman who knew of me and she immediately started telling me all about her fertility history to give me hope and let me know she was with me.

When my kid finally gets around to coming, it’s this environment I want to bring it into. Of course I’ll need the help and support, but more importantly, I want to be surrounded by people who recognize the miracle.

According to our current timeline there’s no way I could get insurance, get a surgery, recover, go through all the IVF rigamarole, get pregnant, stay pregnant, for 9 whole months, and give birth, all before Bear’s training is complete and we’re shipped off somewhere else.

When I realized this, I burst into tears. I’m sure that wherever we’re sent I’ll find new people to bond with and who will support me, but this just struck me as yet another disappointment an an epic series of disappointments, reminding me that I can have NOTHING the way I envision it.

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Why do you hurt me so internet?

I don’t know how we all lived before the internet came along. It’s funny to think back and realize that as short as five years ago it wasn’t the mainstay it is now. Now I use the internet more than I use the television and telephone combined.

So you think I’d know by now that the internet, while full of valuable information and great resources, is also full of half-truths and wackjobs. This especially seems to be true whenever I look around for info about endometriosis. I’ve found a lot of great articles that help me to get a grip on what I’m fighting with, blogs of other survivors, support groups, etc. But I’ve also found a steady barrage of alarmist propaganda.

I just read one article, on a very professional looking website with a very easy address – two factors that usually help you weed out the crazies (I’m not going to lose much sleep over information I find at a geocities site.), that detailed the dangers of xenoestrogens and how to avoid them. Want to know how you avoid these chemicals that will give you breast cancer and endometriosis? You never touch anything plastic ever again, load up on vitamins to protect yourself, stop using soap and any hygiene products, and only eat organic food.

Or in other words, drop out of society and become a hermit. Because maybe your natural odor smells like roses, but if I stop using soap and deodorant, no one’s coming near me.

As much as the article bugged me with its fearmongering in support of natural progesterone and book sales, it’s probably not wrong. I too find it more than coincidental that all of a sudden endo is everywhere with more people keeling over every day, breast cancer rates rising and girls beginning puberty younger and younger every year. I understand how polluted our planet is becoming and realize that there must be a toll on our bodies. So let’s publish the studies and make manufactures responsible for the products they use, instead of scaring the poor women struggling to live through this disease.

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I have to be functional today….

Bear is now the ward mission leader at church. Which means that he’s in charge of the guys on the bicycles. They’re very nice boys (most of the time) and if you say no thank you they’ll leave you alone (unless they’re aggressive dillweeds), just to clear up any hate out there.

So today they’re coming over for dinner. The missionaries basically go out into the world with only rudimentary means of support, so it’s up to the members of the church to feed them as much as possible. I’ve avoided doing this for the past few years because, 1) We’ve barely been feeding ourselves, 2) We’ve moved so many freaking times we’ve barely felt like we’ve been involved in our wards, and 3) it’s a little hard to play hostess when my uterus is attacking me from the inside out.

Last night I was up until 4 am playing those stupid griddlers, because I had taken an excessively long nap and because I’m a chronic insomniac and usually up at that hour anyway. Come 11 am the phone starts ringing off the hook. It’s Bear calling from work to wake me up and make sure I take lots of pain pills so I don’t scare the poor boys with my grunting and moaning, and by the way, could I take the chicken out of the freezer?

So I’ve been crawling around the house all day, straightening up my clutter in the dining room, and then laying down. Vacuuming the rug, and then laying down. Sweeping the floor, and then laying down. Folding the laundry…etc.

It’s 2:30 and I’m exhausted. And the house is still messy. I haven’t even started the bathrooms yet. But they’re two single 19 year old boys…you think they’d notice?

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I’m Back!

For the past few weeks I’ve been traveling like a gypsy, and I’m sick of it. I’m now grateful to be back in my own bed, to not have to suck it up and walk and walk and walk and pretend I’m having fun as I strive to not pass out.

Plus, I missed my Bear like crazy because I am a goober and we are joined at the hip.

First I went to Girl’s Camp, which is where LDS teenage girls all get together in the woods and learn about wilderness stuff as well as church stuff. Plus we sing silly songs and do skits and have a grand old time. For me personally, the experience was so so. I had a couple run-ins with some nasty leaders, I got in trouble because, gasp, I actually like my husband and want to call him, and I was absolutely physically beat up by the end of it. But it was also amazing to be there when my girls needed me, to watch them blossom as they got to know each other better and develop a testimony of the gospel, and I was given so much strength to get through the experience that I believe came straight from God so I could serve these girls. Overall, it was very hard, but I’d go again next year.

Then, right when I got back from that I had to jet off to Vegas with my Mother in Law Sally. Every year Sally and her sisters and all the girl cousins on that side of the family get together and go to Vegas to celebrate Sally’s sister Marsha’s birthday. Every other year I’ve managed to get out of it. As cool as Marsha is and as fun as Vegas is, the thought of a week without Bear and with a whole group of his extended family has always forced me to run screaming. Coming in as an outsider to a tight knit family can be daunting, and it hasn’t been a completely seamless fit for me. Without Bear as my safety net, it just sounded like one awkward moment after the other. This year I didn’t have an excuse, and no matter how many times I said, “I’m sick! I can’t do it!” nobody would listen. Bear finally begged and begged me to go, and I thought my favorite cousin was going to be there, so I caved.

She ended up bailing, but I didn’t find out about that until I’d already flown down to OC and was in the car to Vegas. And by then it was a little too late to back out. But despite myself, I ended up having a great time. I think the key was that there were only 11 of us, and every other time we get together there’s at least 30. This time there were no kids, no husbands, no place else to go. We were thrown together and forced to get personal. I think it was really good for me.

So now I’m home and I wish I could say I’m never leaving again, but in two weeks we’re back down to the OC for Bear’s high school reunion.

I wish summer would end already.

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So what can I eat?

Well meaning crazy people keep offering me advice that I politely nod and smile at as I think unkind thoughts. We’ve all heard them before: Just relax, it’ll happen when it’s right, try magnets, try changing your diet, try these crystals, try standing on your head as the full moon wanes, whatever.

Aside from the condescending advice to “just relax,” which is always sure to send my blood pressure through the roof as I yell “Hulk SMASH!”, the only one I really get sick of is the advice to change my diet. People are always swearing by one thing or another, some new vitamin, a new supplement, some oil you’re supposed to swallow by the tablespoon four times a day, some new thing you’re supposed to never eat again.

For years I’ve been told that eliminating sugar from your diet is supposed to help. I used to go to church with someone who had done this, and people just could not stop talking to me about it. I have three problems with this: 1) I love candy. Bad. I just ate a packet of Lik m Aid yesterday and that’s nothing more than powdered sugar eaten with a powdered sugar stick. I could never see a movie again without my Hot Tamales to eat with my popcorn so I make cinnamon candied popcorn in my mouth. I just couldn’t do it. 2) I’m a wannabe foodie with aspirations of going to cooking school some day. How can you call yourself a foodie or a chef if you limit your diet so much? Food is wonderful! It’s like sex: It was made for a physiological point, but it’s also there for us to enjoy. 3) Sugar is in EVERYTHING. I couldn’t eat bread or fruit or anything convenient. I’d be limited to eating vegetables and meat. And that is freaking boring.

I just read an interview with the author of some endometriosis nutrition book, and the diet she’s recommending is wheat free, trans fat free, with a mountain of vitamins to swallow every day. So under this diet, not only could I eat no bread, pizza, corn, pasta(!), rice, or lentils, but I’d have to strictly limit the amount of meat and dairy I ate.

So essentially, the experts are telling me that for me to get better, I have to eat nothing but vegetables and vitamin supplements.

I’m sorry, that just sounds like a new ailment to me. I think I’ll stick with the one I’ve got.

Besides, if, because of my condition, I lack the strength to get out of bed and do the laundry, then where am I supposed to find the energy to devote my whole life to monitoring every morsel going into my mouth. I’m lucky if I can make my way to the kitchen and dig up something to throw in the microwave so I’ve eaten something before Bear gets home.

Which reminds me: I better go see if I have any George Jetson pills in my kitchen I can swallow for lunch.

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I’m bumming hard today

I know I’ve been whining a ton lately. I guess I go in phases. I’m up up up for a few weeks, and then crash. I was actually starting to pick myself up and dust myself off when I got hit with some bad news only in my world which revolves around me and is selfish and petty and jealous.

Bear’s brother and his wife, who only got married in April, are now going to have a baby.

Bear’s sister called us the other day to check up on us. She beat us with the first grandchild after she and her husband had been trying for TWO WEEKS! The BCP’s hadn’t even left her system and Wha la, she’s pregnant. Now that baby is two years old and they haven’t been able to get pregnant with #2 for about a year.

She commented that hearing the news was difficult for her after 1 year, after 5 1/2, we must be feeling pretty low.

Well of course we were, but you can’t say that about a baby. Of course we’re so jealous our eyes shoot flames and we’re completely sad and despondent that yet again we have to be excited while our hearts are breaking and yet again we have to watch it come so easily to someone while we have almost no hope. But you can’t say that because a baby is a joyous event. And to wish they hadn’t gotten pregnant would make you a very small person indeed.

And yet that’s exactly how I feel.

I’m bracing myself for another year like 2002 when everyone I knew got pregnant. Every one of Bear’s cousins had a baby, his sister had a baby, my two sisters and my sister-in-law had a baby, my three best friends had babies. And it really really sucked, but life was changing for us too, so that helped to distract. I got to quit my soul-sucking office job and we moved cross country for a grand adventure of our own. This year Bear’s brother is having a baby, my sister is having a baby, one of my friends is having a baby, and I’m fully expecting more to follow what with the typical spacing of children. Only this time, instead of a grand adventure, I’ll be trapped in my bed, unable to even get up to make my lunch.

I just came from my weekly activity with the young women, and it sucked. One of our personal progress goals (think merit badges) was physical fitness, so I brought my favorite salsa dance aerobics tape and then sat in the corner as everyone else had a blast cha-chaing up a storm. I didn’t even attempt it because I knew I’d a)have an asthma attack b)pass out or c)pass out after an asthma attack.

So the moral of this story is: life sucks.

As a side note, Bear had an important interview this week, so if anybody out there actually reads this besides my new friend J, could you just say a prayer/light a candle/send out vibes/hug a tree that he gets it so we can actually have health insurance and I might have hope of leaving my bed sometime this year? I’d appreciate it.

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I’m so freaking bored

Seriously, how do people on bedrest do it? I’m going out of my mind!

Of course it doesn’t help that it’s been in the 90’s every day this week and our apartment’s central air is so crappy that it doesn’t seem to make it to the bedroom. I sweat like a pig everyday until the sun goes down and I can open the window and pray for a breeze. I have to get up every few hours to hose myself off and then I eat my weight in my new obsession – root beer float flavored frozen yogurt.

I’m probably better suited to the bedrest than most since I’m a crafty gal. I’m currently crocheting a bag, knitting a scarf, and crosstiching some stockings, plus I’ve got some word searches and plenty of books, and a TV in the bedroom at the moment, and none of those things can hold my interest. I’m sick to death of all of them.

I think I just need to spend some time in some decent air conditioning and my crankiness may go away.

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Fighting Anxiety

I’ve been feeling vaguely panicked all day today. So much so that I haven’t done one dang thing. I just keep wandering from room to room, spending a couple minutes on moving the phone to the charger, putting a towel in the hamper, petting the cats, and then moving on. I’m so unsettled I can’t even just lay down.

Once I finally forced myself onto the couch, I realized that I’m hurting quite a bit. The anxiety I’d been feeling had completely covered it.

There comes a point where the pain just stops making it to your brain. When the pain is especially extreme in one moment, you might pass out. When the pain is extreme constantly, you begin to compensate and for brief moments it might recede into the background like music. But it still makes its presence known. I can’t seem to breathe right, I’m weak and tired and dizzy, just like I might not be able to make out what the music is, but it could still keep me from communicating effectively.

So all day when I’ve been feeling restless and panicky, it’s really because I couldn’t breathe. And why couldn’t I breathe? Because the pain was interfering with my body functions. Honestly, sometimes it’s like Chinese water torture. It’s not that the pain is always as extreme as it could possibly be, but the fact that it never. freaking. goes. away. makes it so much more intense than it should be.

Sometimes it makes me feel claustrophobic. Like this broken body I inhabit is a sarcophagus I’m trapped in. It’s that feeling of constriction and lack of control. I am bound by this pain and there is nothing I can do to stop it. No amount of baths or cool washcloths or frozen yogurt or heating pads will truly just make it stop and set me free.

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Today I want to shoot Pollyanna in the head

I think I can safely say, with no false modesty, that I am a freaking WORLD CHAMP of positive attitude. Here I have a literal cancer* running my life, destroying my health and complicating my marriage, and I am almost always the one telling everyone else around me to, “cheer up, I get to knit all day, Whee!”

*endo is a cancer in the mutated cells sense, not in the malignant metastasizing sense. So it falls in the category but it won’t kill me, no matter how much I hope for it. Besides, it sounds gloomier, and today that’s what I’m after.

Today I have run smack into the wall of crappy outlook and I think I’ll stay here slumped at the bottom in my little self-pity puddle for a while.

It was probably the diarrhea that set me off. After weeks of constipation so bad my bum would bleed every few hours, today the pendulum swung to the other side as I gripped my guts as hard as I could, just trying to keep them from exploding through my belly button. My abdomen is ugly enough with the bloating and the stretch marks from my last laparoscopy and the burn marks from living with a heating pad clamped to my middle 24/7, I could really do without the fingernail claw marks, thanks.

As uncomfortable as all that is, my real problem lately has been with Bear. We’ve had a couple discussions lately that have not been at all pleasant for me, but he needed somewhere to go with all the garbage this disease forces on him. In accordance with my Pollyanna attitude, I tried to draw him out, to be the big brave person so he could vent all of his feelings about what he has to deal with. Turns out I overestimated myself. Once I got him going there was no stopping him and it didn’t take long before I was begging him to talk to our Bishop instead of me so I wouldn’t have to hear about how I was making his life suck.

I completely get that this disease affects him too, that’s why I started the conversation in the first place. He has to work a full day and then come home and do everything for me, including change my clothes and occasionally bathe me. All the while he has no real evidence that there’s anything truly wrong with me, he just has to take my word for it when I say, “Bear, be a dear and bring me more pills, would you?” Or, “Oh, I can’t do the dishes, oh ow, the pain. Bring me a cold drink?” If I were in his shoes I couldn’t help but wonder if my wife was milking it.

Not to mention the lack of sex. Oh don’t even get me started on that.

Yesterday he had a really rough day at work, but not half as rough as some he’s had, just a run of the mill bad day. Then he went to the bank and discovered we are OUT of money until the 25th. And we haven’t gone grocery shopping in weeks. He came home so sour and depressed, I couldn’t do anything to help him. I ran to the kitchen and ransacked the shelves and came up with a menu to get us through the week (it consisted of peanut butter saltine cracker sandwiches, but we wouldn’t have starved), I came home early from Young Women’s, we watched all his shows together, nothing helped. And if Sydney Bristow kicking bad guys butts in a tiny dress won’t cheer him up….we’re in some serious trouble here.

Finally I grabbed his face and said, “Dude, I need you to let it go. We’ve got bigger problems than money.” Even that wouldn’t penetrate his depression shell, until I started crying because I was so severely positivity dehydrated I couldn’t come up with one more word.

I think the best lesson we’ve learned as a couple through our soon to be 6 years of infertility, family troubles, unemployment, moves, chronic health problems, operations, career changes, etc. is the good mood give and take. Bear had been depressed all day and when he saw me crack, he recognized that his turn was over and now it was my turn to be attended to.

Once he gets home we’re going to try to see Star Wars. Although in Modesto, CA, home of George Lucas, the theaters are freaking INSANE. Maybe I’ll drown my sorrow in light saber battles, maybe they’ll be sold out and I’ll have one more guest to my pity party.

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My latest lifeline

The only thing I’ve been doing lately that involves leaving my house has been my calling at church. I work with the teenage girls 12 – 18, which means I teach them on Sundays, and every Wednesday we get together for “activities” which is what we mormons call youth group.

This has been AWESOME. I love teenagers. They are the coolest. And they always think I’m the coolest because I think they’re the coolest. The other women I work with right now are great, but a lot of women hate working with teenagers because they don’t know how to relate. They try to get all rigid and controlling, when all you really have to do is just relax and have some fun with them.

It’s been incredibly rewarding. I have very little energy throughout the day, and what I do have I devote to working for these girls. I make calenders, research future activities, make crazy ornate handouts, all because it’s just so nice to have one area where I’m needed and I can actually step up. A paycheck won’t give you a hug and come visit you before prom so you can see them all dressed up. A paycheck won’t comment on how cute you always look and ask for fashion tips, or help organizing her backpack, or come to you for help and advice and make you feel like you still have something to contribute to the world.

I’m actually surprisingly okay with not leaving my apartment most days, but these girls give me the boost I need when I’m starting to feel stir crazy.

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